Rare Disease Advocate Tina Jackson Helps Caregiving Moms Find Hope Through New Book

Tina Jackson, founder of Kids Rare Care, speaks about her daughter's complex medical journey. Photo credit: Lori Sparkman

Suddenly Brave Together Book Cover

Suddenly Brave Together Book QR Code For Purchase

Heartfelt Collection of Letters Offers Strength, Perspective, and Community

Focus your attention on your child’s progress, not on their diagnosis, not on any conditions or labels. Your child was designed uniquely and gifted.”

— Tina Jackson

REDFIELD, AR, UNITED STATES, May 5, 2026 /EINPresswire.com/ -- For speaker and rare disease advocate Tina Jackson, motherhood didn’t unfold the way she once imagined - and that unexpected turn became the foundation of her life’s work. Jackson and her daughter Tionna “Miss T” Jackson are sharing their deeply personal 30-year journey as featured contributors in “Suddenly Brave Together: Letters to Caregiving Moms at a Defining Moment in Their Lives,” a new book published by Blue Hat Publishing.

Published in partnership with nonprofit organization We Are Brave Together, the book brings together the voices of experienced caregiving mothers whose children have faced life-altering diagnoses and emerged with wisdom they wish they could have shared with their younger selves.

Jackson’s chapter reflects more than 30 years of navigating complex medical realities alongside Miss T, who lives with a rare genetic disease and communicates using an Augmentative and Alternative Communication (AAC) device. What began as a season of fear and uncertainty gradually became a mission rooted in advocacy, faith, and practical leadership for other families walking similar paths.

“There is a moment when your child’s diagnosis changes everything: your plans, your expectations, even your sense of who you are,” said Jackson, founder of Kids Rare Care, devoted to equipping mothers new to caregiving on complex medical journeys. “Writing this letter gave me a sense of relief to finally share our journey publicly because I knew the impact would be life-changing. Our journey hasn’t been easy, but it has been worthwhile.”

Jackson is an engaging public speaker and her work spans disability inclusion training, legislative advocacy, and collaborations with initiatives such as the Preemie Advocacy Network (PAN), where she has helped amplify support for families facing medically complex beginnings.

Together, the Jackson women often take the stage as a dynamic speaking duo, offering audiences an honest and uplifting look at resilience, purpose, and the importance of creating communities where every individual is seen for their abilities.

In a video promotion for the book, Jackson explained ways to hold on to hope when facing rare disease diagnoses and uncertainty.

“Focus your attention on your child’s progress, not on their diagnosis, not on any conditions or labels,” she explained. “Your child was designed uniquely and gifted. I lean into my faith and that, for me, means allowing God to control the outcome but understanding I have some influence in navigating the journey.”

About Tina Jackson

Tina Jackson is a nationally recognized public speaker, rare disease advocate, and founder of Kids Rare Care, an organization dedicated to helping caregiving mothers lead their child’s journey with calm, courage, clarity, and confidence. With decades of lived caregiving experience and a background in federal service, community leadership, and disability advocacy, she works with organizations, faith communities, and national networks to strengthen support systems for medically complex families. To learn more about Kids Rare Care, visit https://www.instagram.com/kidsrarecare/.

About We Are Brave Together

We Are Brave Together is dedicated to preserving and protecting the mental health of caregiving mothers of children with disabilities, medical complexities, and neurodivergence. Through a supportive community, the organization offers interpersonal connections, support groups, retreats, educational resources, online tools, and the Brave Together podcast. Learn more at www.WeAreBraveTogether.org.

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Embracing Life: The Story of Miss T/Video Credit: EITAS

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